After the euphoria of finally being believed and having a name to put to my symptoms, it all suddenly got very real.
It sunk in that I had an incurable, potentially life-threatening disease which could come back at any time and attack any part of me it felt like without warning. Brain, lungs, kidneys, skin, joints, nothing is off limits to lupus. I’d been told about the diagnosis by letter and although I knew that googling it was a bad idea, I challenge you to try resisting that one when you’re going to have to wait two weeks to see a doctor who can explain it. And the internet told me that ‘many patients live at least five years’. Awesome.
(The doctor later explained was that many patients live to old age, just that the organisation in question had only tracked patients for five years. Lesson learned!)
The doctor explained what they thought was going on. Along with feeling relieved (or maybe partly because of it), I cried a lot over those months. It all just felt so unfair. The doctor started me on a cocktail of drugs and tests, monitoring me closely, and very slowly, my symptoms started to improve.
It’s easy, and maybe normal, to be incredibly practical about dealing with your illness at a time like that. You take one day at a time. I remember going for an MRI scan of my brain stem because they were concerned the lupus may be causing damage there. It didn’t seem like a particularly big deal at the time – just another appointment. It’s only looking back and talking about it now that I realise quite how scary it all was.
I guess it’s normal to question why this has to happen to you, and to be angry that it is happening to you.
Throughout my twenties, while I was ill and finally getting diagnosed my friends were out having fun, socialising and then settling down to start the rest of their lives with a solid footing – or that’s how it FELT to me.
Instead, I was struggling to get through the days in pain, tiredness, and growing anxiety, missing out on a lot of the fun because I just needed to sleep. While they were planning hen parties and weddings I was learning about treatment options, getting used to weekly blood tests and trying to stifle side effects of medications.
They were also a wonderful, wonderful support and I couldn’t do this without them. I just wish I could have joined in more.
Lupus, like many long-term conditions, is a waiting game. It can get better, and then flare again for no reason.
So far I’ve been lucky. My symptoms were pretty much brought under control by some pretty hefty medication. After a few years’ treatment and over 20 tablets a day at times, I’ve now been medication-free for several years. I get monitored in case it flares again. And the effects the medication had on my immune system will stay with me forever, making me tired and meaning I take longer to recover from something as simple as a cold and pick up bugs more easily.
Many, many people with lupus are not as lucky as I am, and for them, lupus remains part of daily life.